Monday report from Tom Eye Doctors

Tom asked me to post this:

Tom took Dad to two eye doctors today.  The second one put a contact like protector that will dissolve in a couple of days.  Hopefully this will protect Dads eye from further irritation.  Dr. Saike is scheduled for Thursday as is Dr. Hedari.  Tom is going to call Dr. Hedari and see if he really needs to see Dad.

Pam just returned my call about the dental hygine.  I am hopeful that will be done this week.  Details still up in the air.

Sept 13, 2012 Update on Doctors Visits

Well today is going much better than yesterday.  Yesterday Dad was suffering from severe eye pain, probably due to the erythromycin medication they are putting in his eye.  I talked with the nurse and doctor last night and requested that they discontinue the use of that cream and it is causing the severe pain.  Dad said he was doing much better today and his whole attitude is better when he is not in that pain.

One of the interesting things yesterday, is I asked the nurse that provides the medication to see what she was putting is Dad's eye.  I was right outside Dad's room where she had a cart that she pulls medication and provides it to Dad.  I was surprised to see that Dad's medication is not in a single container, but just one of 50 medications in the drawer.  The nurse would pick up various bags with descriptions on them and throw them back in when they were the wrong one.  She was able to show me the Lacri Lube and erythromycin, but could not find the Refresh.  She found a bottle and showed it to me, but I pointed out that it had someone else's name on it.  She stated they must have just run out and she would have to get more.  I suspect they had not been giving the Refresh, but I have nothing to base it on.

I did have a good meeting with the Dietician at Rosewood and we worked on Dad's diet.  They are going to puree his lunch and dinner, but not his breakfast and he will get scrambled eggs on a regular basis for breakfast.  I asked Dad how it went this morning and he said they pureed his eggs this morning.  I talked to the dining room supervisor today at lunch about breakfast and she said she would get it straightened out and then they served Dad a pureed soup that was milk based, even though his lunch slip said no milk products.  Dad had taken a couple of spoonfuls and really liked the soup, so he wasn't crazy about it when I had them take it away.  They did replace it with Chicken Noodle soup, which he said was ok.  I told Dad he needs to speak up when they mess up his order, but I don't think he will and I am worried that they will continue to need corrections.

I watched Dad do Occupational Therapy both yesterday and today.  He gets OT five times per week and PT six times per week.  He seems to really enjoy it and they are excellent with him.  Today I was in there when they had three patients and I can tell you attitude is a big part of the healing process and Dad has a great attitude.  They gave Dad a three pound bar and had him lift it over his head 10 times for three reps, then he had to extended his arms holding the bar for 10 times with three reps.  The nurse then asked him to do the same but curls and she had to go help a patient get into bed and said she would be right back.  Well Dad finished his reps and then he decides to make up his own exercise, combining the lifting motion over his head and then extending it straight out.  He completed three reps before the therapist came back.  They have him standing and taking steps, then holding a ball and twisting at his waist.  He was a little unsteady at first, but quickly was able to get and maintain his balance.

Dad is still sleeping about 18 hours a day and would sleep more if he is not going to PT/OT and meals.  I was talking to him about trying to play 5 straight or creating a card for Nicole on my laptop and he said he wanted to try the card for Nicole.  By the time I got my computer out and powered up, he was sleeping, so I let him sleep. 

I just heard from Pam, the Social Activities Director that the hygienist that Dad was suppose to see does not take medicare patients like she told me they did.  She said they were looking into other options for Dad including bringing in the person John had lined up and they would pay for it.  When she asked the cost, she gasped, so I am not sure what is going to happen.  She was going to talk to her manager and let me know.  Jim, after John got someone lined up, when I went to tell the nurse that we were bringing in someone, she asked 'why aren't you using our hygienist?'  I told her that you were told they didn't have one and she said they did.  Well, it looks like they might not.

Today we saw Dr Heidari, he said Dads kidney function is down to 18% and his platelet count is down to 45.  He was very concerned about both.  He asked what was the current plan for the pet scan and we said that Dr Trang wanted to clear up the osteomyelitis before proceeding with chemo, so we were not sure it made sense to move forward with the pet scan.  He reiterated his concern regarding chemo, but then we discussed the gallium scan and pet scan.  Both are very safe for Dad and should not impact his kidneys.  He said a MRI with contrast would be the best test for Dad to see if the osteomyelitis is gone, but that anything with contrast would be too hard on Dad's kidneys so the gallium test is the safest and best test given Dad's condition.  He also felt that if we wanted to do both test that Dad should tolerate them both well and that we wouldn't need to wait any specific time between tests.  He also said that he believes Dad will need at least another 4 weeks for antibiotics and probably longer.  And even when Dad's test come back clear, that he will still recommend that Dad be given antibiotics if  he decides to move forward with any chemo treatments.

Dad's gallium scan is scheduled for Oct 1st at 10 am with follow up appointments at the 2nd and 3rd, but we do not have any specific times as of yet.

Dr Heidari also felt that we should have Dr Saike see Dad sooner rather than later as his kidney function is low plus his legs and abdomen are swollen.  Dad says his breathing is not currently impacted, but this would be something to watch for over the next week.  Tom called Dr Saike's office and his first available appointment is Oct 18th.  Tom is working with his office to get that date moved up.  John said that he would be willing to take Dad to the appointments and Tom thought that was a good idea.

Dr Heidari changed Dad's medication back to how they were before moving him to Rosewood or the Heart Hospital.  As of tonight he back on Daptomyacin every 48 hours and Zosyn every 6 hours.  He was on Zosyn 3.75mg and will now be on the 2.25mg.  Dr Heidari felt the Zyvox is not a good long term antibiotic and since Dad has been having further eye problems that the Zyvox might be a contributing factor.  Tom asked if giving Dad the Zosyn and Dapto over 4 hours was better or made no difference and Dr Heidari said that it was a better way to administer the medication, but that it is not good for a patient to be tied to a bed for so long.  That is better if Dad can get up and move around more and get some physical activity.

I am heading home tomorrow (Friday) about 1:00 pm and will be back on Oct 1st unless I am needed sooner.  Jim, I changed the phone in Dad's room to the one he had at his house, so if you call him he can put it on the speaker and should be able to hear you well.  We tried it with Cate and it worked well.  Cate is planning on coming down around Oct 16th and staying until the morning of the 21st (this is still tentative).  Tom will be leaving on Oct 12th for 33 days or until Nov 15th.  Jim if you can give me an idea when you might be coming down, I will try and fill in any missing gaps and John, I hope you don't mind covering the weekends during this time period.  John will take Dad to any Dr Nguyen and Dr Saike appointments and Tom will take Dad to Dr Heidari's appointments.  I do not know if either has plans for Dr Trang's appointments.  Dr Heidari is every week, and the others are every couple of weeks or as needed.  Oh and Tom has made an appointment for Dad for an ophthalmologist, Dr Ling.  This is a Dr that Dad used to go to.  He did not like the eye doctor that we found for him and so we are switching and going to try Dr Ling.

I am sure I am missing something, but it is late and tomorrow is another day.

Love to all, Bill

Gallium and PET Scans

Bill asked me to do some research on Gallium scans and PET scans for the purpose of determining the levels of infection and cancer in Dad's body.  Here are some of my early thoughts:

• Gallium citrate appears to be no more dangerous to the kidneys than the antibiotics Dad is currently taking.  It is often used to diagnose kidney function and nephritis.
• After the Gallium is administered images are taken at regular intervals the first day than once a day for three days.  Each set of images takes about 30-60 minutes to produce.
• Sometimes Gallium scans are also used to determine the level of lymphoma and there may be some value to Dr. Nguyen which may preclude the necessity of a PET scan.  However, Gallium is mostly used to diagnose the level of non lymphocytic lymphomas and may not be acceptable to Dr. Nguyen. (my understanding is Mantle Cell is a lymphocytic lymphoma).  
• There are two other types of scans that may also be used, indium leukocyte imaging and technetium granulocyte.  The indium scan is NOT appropriate, but I would be curious to hear what Dr. Hedari and Trang feel about the technetium scan.
• IF the Gallium scan does take place, please let the testing institution know he has diarrhea and NOT to administer laxatives (this is sometimes, not always, but sometimes done to clear the Gallium from the body)

Some questions for Dr. Hedari at today's appointment:

1. Does he agree with the timing and purpose of the Gallium scan currently scheduled for October 1st?
2. Is the Gallium scan the most accurate in identifying the clearance of the SBO?  What about  technetium granulocyte scan?
3. Is this test going to significantly impact Dad's remaining kidney function?
4. What if the test still shows positive signs of SBO?  Do we just continue the same antibiotic regimen?  Will we need a future Gallium scan?
5. Can we concurrently scan for the level of lymphoma to eliminate the need for the upcoming PET scan?
6. Are there any suggestions he could make about this procedure to give Dad's ENT and Oncologist more and better information?

These might be better for Dr. Saike, but I think Dr. Hedari's opinion is valuable too.

1. Is the PET scan hard on Dad's kidney?
2. Is there a safe time period between the Gallium scan and the PET scan that should be observed?

That's it for now.  I may add some things as I ruminate about this.  I did find a scientific article that recommend the use of N-Aceytl-Cystiene (NAC) as a protector of kidney function for both Gallium and PET scans.  NAC is a nutritional supplement I can provide if you choose.

And this may be completely irrelevant (audacity of hope, and all that) but I did run across this article on the curability of Mantle Cell Lymphoma.  Granted it was a small study of subjects younger than 89 (they averaged 66), but it did talk about 5 year survival rates.
http://www.docguide.com/mantle-cell-lymphoma-curable-intensive-immunochemotherapy-presented-ash

Sept 11, 2012 Doctors and Settling in to Rosewood

Tom and I spent the afternoon with Dad today.  We got to Rosewood about 9:45 and left about 3:30 today.  When we got there Dad was sleeping in his bed, though he was dressed in shorts and polo shirt.  He said he had gotten up and ate breakfast and came back to take a short nap before the doctors appointment.  We got Dad up and had him brush his teeth.  He was unable to put toothpaste on his toothbrush, so I helped him out.  The rest he seemed to do well, including getting out of bed with the use of the walker.

He did walk to the car with the aide of the walker (this is an older style walker with wheels on the back).  We got him to Dr Trang's office and unfortunately had to wait about an hour to see.  We did weigh Dad in before seeing him and he weighed 166 lbs.  Dr Trang asked Dad how he was doing and Dad said he was doing better.  Dr Trang looked in Dad's ear and said that it was the best that he has seen with Dad.  He asked about what Dr Nguyen was doing and we told him about the pet scan and possible chemo treatment.  He told Dad that he would call Dr Nguyen and Dr Heidari to make sure all three were on the same page.  He said he wants to see a minimum of another two weeks of antibiotics and would probably bet his house that Dad would need at least another month past the 25th.  He wants Dad to have a gallium scan around the 25th of Sept.  He said the gallium scan would highlight any infection that Dad has in the bone area of his skull.  He mentioned that he would prefer holding off of chemo until he is sure they have eradicated the infection, he is concerned that infection may come back. 

After Dr Trang's visit, we took Dad to the Garden Spot for lunch where Dad had soup for lunch.  He also enjoyed chocolate pudding, but not much more.  We then took Dad back to Rosewood, getting back about 1:30.  He wanted to take a nap. 

At about 2:30 we met with the staff at Rosewood, with representatives from therapy, food services, social services, nursing and activities.  We first discussed how happy Dad was with Rosewood and we were too, but did have a few ideas that would make it better for Dad.  Most of the items were from Jim's list, great job Jim.  We went through Dad's ailments, which included the SBO, Cancer, facial paralysis and stomach issues due to the antibiotics.  We talked about the food that Dad was being served and they are going to move Dad to mechanically processed soft foods.  They are going to start checking with Dad more to see if he is having diarhea and if so suggest the Imodium AD.  They are going to have evaluated by a Speech Therapist, to see if they can help with his speech due to the facial paralysis.  Also the OT will already had reviewed how he gets out of bed and told Dad that he was doing good.  They are going to observe him brushing his teeth and give him a routine that he can follow for brushing his teeth.  We also reminded all of them that Dad cannot hear out of his left ear and cannot see out of his right eye.  That Dad may not always fully understand them even when he says ok or nods in confirmation.  I talked about the importance of having Dad repeat back any important instructions or information.

OT will review Dad to see how he does dressing himself and the nursing staff will provide assistance to Dad in putting on clean clothes every morning.  We also let them know that Dad prefers to get up at 7:00 am so that he can participate in breakfast and all meals in the main dining room.  We reviewed all of Dad's medication and we questioned the stool softener and talked about the lacri lube and eye drops.  They said that Dad was getting eye drops every two hours, but when we asked when he got his last eyedrops, they said it was 1:06 pm.  We told them that he was at the doctors at that time and she said, oh sorry it was 11:06 am.  We said he was still not here and she said she will have to get back to us on when he had the last eye drops.

The meeting was very helpful in clearing up misunderstandings and the staff was very responsive and eager to help, often suggesting what they could do when an issue was brought up.  We did forget to mention the issue around response time when Dad needs to use the bathroom.  We will talk with the head of the nursing staff tomorrow.

PT and OT

One of the very positive things about Rosewood is the fact dad receives Physical Therapy and Occupational Therapy every weekday.  OT focuses on function and coordination. PT focuses on strength and elevation of his heart rate. Dad really seems to enjoy it and looks forward to spending time with the staff. They are very kind and encouraging.

Here dad stands, holding a rail and practices kicking a small ball against the wall, alternating feet.

Here dad uses 2lb weights for upper body strength.  This is after he practiced standing from that bench without the use of his arms.  He did it 15 times in about 20 minutes.

Each session is 30-45 minutes.

Here are two short videos to give you a better idea of what they have Dad doing.

https://docs.google.com/open?id=0B_B-QKBHRzApZ21hdGhQLUpFMGs

Enjoy,

...Jim

Jim's Rosewood Playing the Cards Your Dealt

I thought it might be helpful to write up a couple notes to pass on to the team.

Things to talk to Rosewood about:
- Diet, high protein meals if possible.
- Regular eye drops throughout the day.
- Better response when he presses the button.
- Imodium AD every 8 hours to control his diarrhea, until we see improvement. Ask Dr. Heidari on Thursday for advice if it's not improved by then.
- Make sure every member of the nurse staff and PT/OT understands he only hears in his right ear.
- Ditto, he only sees out of his left eye and he can only see shapes.
- Have PT/OT help teach him how to get in/out of bed by himself. Lifting his legs up on the bed is getting harder for him.  Have them teach him how to put the toothpaste on the toothbrush with his vision challenges.
- He would like to change his undershirt every morning and put on a clean golf shirt.  Can we direct the morning shift to do this before breakfast.
- Make sure the staff doesn't allow him to sleep through a meal.  He did not eat lunch on Tuesday because he was sleeping and they didn't think to wake him. He can't read the clock.

Observations:

Dad likes to sleep in his undershirt and grey Depends. When I get here, I check to make sure he has a clean undershirt and new golf shirt on.  He wanted a couple "white" golf shirts, so I grabbed two from his closet. I didn't get a chance to write his name on the tags.

I check to see of he brushed his teeth after breakfast, he usually says no and ask me to help him, which means I move this toothpaste and brush to the sink and put the toothpaste on the brush.

Getting out of bed is a strain for him, so I've been helping him sit-up out of bed by letting him grab each of my hands and pull himself to the edge of the bed. I get his slippers on and then he can do the rest on his own.

The heart hospital asked for dad to take protein shakes, 2 per day. I don't know exactly which doctor requested it. They asked me to go to wal-mart and buy a case of Nepro. The problem is he never drinks more than a sip and it sits next to the window, near the sun. I asked John to see if we can substitute the Nepro, that he doesn't drink, for two tablespoons of a Twin Lab's liquid protein instead.  I spoke to the nurse about it tonight and she said the doctor will have to ok it and she can't give it to him.  She can't stop us from giving it to him though.

Dad more comfortable using the Depends instead of underwear. He still has Diarehha, I have tried to teach the staff to ask dad if he still has diarrhea, but they don't. So I have been asking for the Imodem AD every 6/8 hours for him and they have been great getting it for him when I ask.

He's having trouble chewing food on his right side.  That is why he likes soup for lunch and dinner.  Breakfast seems to be his favorite meal.  He doesn't like eating all the bread and breaded meals (ham on toast, cheeseburgers, etc...) or things that are hard to cut up.  I made friends with Simone and asked her if she could help dad cut up his food during her shifts and she said, "of course" and dad was very appreciative when she cut-up the cooked ham tonight.  She even made a comment how hard it was for her to do it with a butter knife.

Dad is wearing suspenders and likes them, however they are a challenge to manipulate when using the restroom. I think elastic shorts might be easier if they'll stay up.

I got dad to sit in his chair instead of going straight back to bed several times.  He's a good sport, but he gets bored in the chair because he really can't see well enough to watch TV or play a game.  We also said outside on his patio a couple times for 10 minutes or so and he seemed to enjoy getting a few minutes on sun.  We also went to the shaded area across from the PT room and he enjoyed that as well.

This afternoon we visited with John and Ranae and decided to walk over to the dining room for more space. I thought the change of location really helped Dad, he was more alert and attentive.  He also got to meet some other people staying there, like Charles (81) - the country music singer who invited dad to a sing along tomorrow at 4pm.

I'm going to post one more message about PT and OT next and see if I can include some photos and video I shot.

In closing, I share everyone's observations in terms of Dad's strong will and amazing spirit.  I'm blessed I was able to share the last couple of days with him.  A lot of the time, I would just sit with him on the his right side of the bed and give him play-by-play on the US Open or read him headlines from the news.

I got to watch him do all of his PT and OT sessions and got to see first hand how nice the staff are to "Mr. Bill" or "Mr. William". Are they perfect, no way. However, I never once witnessed any staff member being "short" with anyone.  Dad had two accidents while I was there with his diarrhea and each time two staff members came to his aid, took him in the restroom, shut the door and cleaned him up, and did it cheerfully without judgement.

I believe dad likes the variety of people and personalities and being on a set schedule. He's fighting using the wheelchair with all his might because he firmly believes if he allows people to start pushing him around in it, his legs will just weaken more.

I share the heartache and emotion of seeing dad like this, as all of you have.  This week I got a lesson in "Playing the cards I have, instead of complaining how crappy they are." He continues to be an amazing role model to me every minute I'm around him.

Love to all,

...Jim

Dental Information

I called my dentist, Dr. John Wilson.  The office runs on a minimal staff on Fridays but Stephanie was kind enough to track down the doctor and get back to me.

Dr. Wilson would have to examine Dad and that would be about $60.  He may insist on x-rays, however, I think my realtionship with him is good enough that I may persuade him otherwise.  If I can't, then x-rays are about $150. 

Cleaning can run from $90 - $200 and that depends on the severity of Dad's teeth.  The exam and cleaning would take about 90 minutes (with 30 minutes for the exam and 60 minutes for the cleaning)and we split it up if Dad is not strong enough.

Dr. Wilson's office is modern and up-to-date and I consider him to be an excellent dentist.  His office is in the same center as CBCC, right across from Truxtun Lake.  I will add contact info on our contact page.

I have a call in to Dr. Hedari to double check that there is no danger to the dental hygenist who would work on Dad.  I am waiting for someone to call me back.

Let me know your thoughts and I will move forward or not to make the necessary appointments.

Update:  Just got the call from Dr. Hedari that it is safe to perform a cleaning.